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Health: Brittle Bone Society

Volume 728: debated on Monday 6 June 2011

Question

Asked By

My Lords, we welcome the important work of the Brittle Bone Society in raising awareness of this distressing condition and in providing advice and help to patients. We would be pleased to consider any request from the society for support.

I am grateful to the Minister for that reply. As he is aware, the society works in the field of osteogenesis imperfecta, which is not to be confused with osteoporosis. I know the Minister is also aware that a particular problem in this field is the transition from childhood to adulthood and that there is definitely a doubt about the level of services. Will the Minister consider a request from me to receive a delegation, led by me and accompanied by the chief executive of the Brittle Bone Society, Mrs Patricia Osborne—who used to work for me in a former life—trustee John Phillips and Professor Nick Bishop, in order that the society can have an input into the development and allocation of services for that period from childhood to adulthood for those who suffer from this condition?

My Lords, I should be more than happy to see the noble Lord and representatives of the Brittle Bone Society to discuss those matters. I am well aware of the issue he raises. I understand that when an application was made to designate specialised services for children with brittle bone disease as a national specialised service, no similar case was made for adult services. However, if the society or leading clinicians in this field now feel that an application should be made, we would be pleased to refer it to the Advisory Group for National Specialised Services against the normal criteria.

My Lords, given that osteogenesis imperfecta is a genetic disorder and that real progress in proactive treatment for sufferers will require progress in genetic medicine, is my noble friend reassured that we retain in this country sufficient researchers, funding and facilities to ensure that sufferers from osteogenesis imperfecta and their families can look to research from this country to see progress in proactive treatment rather than simply to elsewhere, particularly the United States of America?

My noble friend is absolutely right. As he knows, the UK is one of the pioneers of genetic research; it takes a lead role in the international human genome project and its application to medicine. The human genome project has sequenced the 25,000 or so genes that make us human and research is now looking at how groups of genes interact not only with each other but with environmental factors to cause disease. We remain absolutely committed to genetics research and aim to make the UK the best place in the world for that research to continue. If there are proposals relating to this specific condition, my department will be very pleased to receive them.

My Lords, would my noble friend also pass his invitation to researchers in dentinogenesis imperfecta?

My Lords, I shall need a small tutorial from my noble friend on that condition, which is not mentioned in my brief, I fear.

My Lords, does my noble friend the Minister accept that the charitable sector is absolutely fundamental to medical research in this country, putting over £1.4 billion a year into research? The Brittle Bone Society is one of the charities that does exactly that. However, many of these charitable research organisations fear that the resources that go in through the charitable support fund may be lost at the end of this comprehensive spending period. Will my noble friend give an assurance that that fund will continue at current levels into the future so that the charitable sector in funding research can have the security of knowing that it will not have to find money simply to underpin the research facilities in our universities?

My Lords, the voluntary sector investment programme has a confirmed budget of £25 million for 2011-12. That is the same as the budget allocated last year. I hope that that sends a strong message to commissioners about the role that the voluntary sector plays in health and care. We are sending a message to local authorities and PCTs that the voluntary sector should not shoulder a disproportionate share of any funding cuts that they may have to implement.